Archive for the 'awareness' Category

Different Like Me is (finally) here!

Thursday, October 2nd, 2014

It was a two-year process, but Different Like Me is finally published!

pages 1 and 2

pages 3 and 4 - Copy

pages 15 and 16

 

To find out about that trip you can order a copy from Amazon here. All proceeds go to support orphans with arthrogryposis who need adopted, and other kids with arthrogryposis (not my own) who have equipment needs.

I wrote a Children’s book!

Sunday, June 1st, 2014

AlexisBook I wrote a Children’s book! It’s not yet published. If you would like updates about it, or information on how to order it once it becomes available, please join our Facebook group by going here!

Different Like Me is a book about a little girl with arthrogryposis who goes on a grand adventure across the ocean to meet her little brother! Well, if you follow this blog, you already know the story. But you’ve never seen it quite like this! With 25 fully illustrated pages of pure delight your kids will love it! (Oh, wow, I sound like an ad. LOL)

For all of those people who asked me to write a book. THERE! It’s just 25 pages written at a 2nd grader level, but that’s pretty much all I could manage. :)

It was wonderfully brought to life by Lauren Burke from Hey Hey Designs. She does work for blogs and ads and so much more!

This whole project has taken over 18 months to complete, but it has been well worth the effort just to see Roland joyfully freak out every time he sees himself or his sister in cartoon form. :)

Finally a book they love that breaks up the hours and hours and hours of Mo Willems material that gets devoured in our home!

Proceeds will go to support the medical needs of AMC kids (ones not living under my roof :)), orphans with AMC and the families adopting them, and hopefully, if we sell enough, AMCSI!

Also, and foremost, this will promote arthrogryposis awareness! (Or Hall’s Contractures! Or what I’ve been calling it lately just to dumb it down: Multiple Fixed Joints.) Awareness is my main goal, and something I believe in since we need awareness to receive funding, research, insurance approvals, a place at the table, etc.

I have broken up the word arth-ro-gry-po-sis and tested it on six year olds who can now pronounce it! So the hope is that this word becomes easier to say! Laelia and her peers read it fine, even with the big arthrogrywhatsis word in there! In the beginning of the year when Laelia’s reading tutor, Danielle, would come over, she would bring strips of paper with big medical or scientific words on them. Laelia got to keep the strips if she said the word correctly, which was hugely motivating. It was amazing what giant words she could then pronounce once they were read one syllable at a time! Like lepidopterist! It’s lep-i-dop-ter-ist, a.k.a. butterfly scientist! Even my brain goes to mush looking at lepidopterist, but I calm down when it’s lep-i-dop-ter-ist. :)

Please feel free to share our Facebook group far and wide! Thank you!

hard conversation about grooming

Saturday, May 31st, 2014

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Avoid this guy! Hehe. :)

(Actually that’s me dressed up as my male coworker for Halloween. I won $50.)

(Which leads me to my point…)

I’ve been encouraged to post this publicly since it’s so very important.

This morning was hard. This morning my husband and I sat down over breakfast to explain some family rules to my sweet trusting six year old.

Rule #1: We don’t accept gifts from grown up men unless they get Mommy and Daddy’s permission first or are giving stuff out to everybody. (Like when her wonderful teacher, Mr. P, gives out books to everyone in class.)

Rule #2: We don’t keep secrets from mom or dad.

These are the rules for our six year old. They will be refined and redefined as Laelia gets older.

What brought this about was that Laelia started receiving gifts and attention from a bus monitor. Let me be clear: I truly believe he was just being nice to her; and I don’t think there’s any ill intent on his part whatsoever.

But now she will not accept any gifts from him and we practiced explaining why to him.

Because grooming happens when wonderful, kind people want something from us. Because people you know are way more likely to harm children than strangers. And there’s no reason to give my daughter more attention because she has a disability.

In fact if we teach kids with disabilities to expect focused attention from adults for no reason other than that they are “special” then they won’t be discerning when the wrong kind of person wants to give them that attention.

She asked questions and hubby and I provided answers. No, it’s not okay for someone to touch your body if it makes you uncomfortable EVEN IF they are helping you into your wheelchair or something else you need. Speak up! No, it’s not okay for someone to get too close EVEN IF it’s part of their job in physical therapy or occupational therapy. Tell them when to back off and the good ones will! You have control over your body, even over the parts you can’t move yourself. Your body should be respected at all times. Period.

The conversation went well, and we’ve honestly never had an issue with any of the wonderful adults in Laelia’s life. Laelia is a great self advocate. Also she knows if someone gets mad about our family rules then that’s wrong. A good person will understand.

In one of the most informative blog posts I’ve read on this subject, Checklist Mommy offers the following advice. I couldn’t say it better so I’m just copying and pasting her words here:

“Stop telling your kids not to talk to strangers. They might need to talk to a stranger one day. Instead, teach them which sorts of strangers are safe. You know who’s safe? A mom with kids. Period. Your kid gets separated from you at the mall? Tell her to flag down the first mom with kids she sees.” [quoting a child safety educator on NPR here]

  • It is unlikely your kid is going to be abused by a weirdo at the park (huge sigh of relief).
  • That said, if there is a weirdo at the park, he’s not going to fit the “stranger” model — so stop teaching your kid about strangers! He’s going to come up to your kid and introduce himself. Voila! He ain’t a stranger anymore.
  • Teach your kids about TRICKY PEOPLE, instead. TRICKY PEOPLE are grown-ups who ASK KIDS FOR HELP (no adult needs to ask a kid for help) or TELLS KIDS TO KEEP A SECRET FROM THEIR PARENTS (including, IT’S OKAY TO COME OVER HERE BEHIND THIS TREE WITHOUT ASKING MOM FIRST. Not asking Mom is tantamount to KEEPING A SECRET.)
  • Teach your kids not to DO ANYTHING, or GO ANYWHERE, with ANY ADULTS AT ALL, unless they can ask for your permission first.

See how I said ANY ADULTS AT ALL? That’s because:

  • It’s far more likely your kid is going to be abused by someone they have a relationship with, because most cases of abuse follow long periods of grooming — both of the kid and his or her family.
  • Bad guys groom you and your kids to gauge whether or not you’re paying attention to what they’re doing, and/or to lure you into dropping your guard. Don’t. Kids who bad guys think are flying under their parents’ radars, or kids who seem a little insecure or disconnected from their parents, are the kids who are most at risk.

SO:

  • Be suspicious of gifts that adults in positions of authority give your kids. There’s no reason your son should be coming back from Bar Mitzvah study with a cool new keychain or baseball hat.
  • Be suspicious of teachers who tell you your kid is so special they want to offer him more one-on-one time, or special outings. That teacher who says your kid is into Monet, he wants to take him to a museum next weekend? Say thanks, and take your kid to go see the exhibit yourself.
  • You know that weird adult cousin of yours who’s always out in the yard with the kids, never in the kitchen drinking with the grown-ups? Keep an eye on your kids when he’s around.
  • Oh, and that soccer coach who keeps offering to babysit for free, so you can get some time to yourself? NO ONE WANTS TO BABYSIT YOUR KIDS JUST TO BE NICE.

On the radio

Sunday, January 26th, 2014

The first time I was ever on the radio was in South Africa. I was one of a group of visiting Americans and we were on a tour of the station when we got roped into going on the air. It was fun… up until they had me do a birthday shout out/song dedication. The name was an Afrikaans name and I botched it big time. The radio host tried to correct me and I failed a bunch more times. I’m bad with accents. Like really bad. I once was asked to be the sign language interpreter for one of the original Jamaican bob sled team guys who inspired the movie “Cool Runnings.” I had to switch out after the first five minutes because of my brain’s inability to understand his accent. (And he spoke perfect English.) (Ugh.) Now this time there was no accent but I’m still just awkward.

My favorite character from Parks and Rec, Ben Wyatt, has the same awkward issue when giving an interview. Solidarity Ben.


That said, I was thrilled to have the opportunity to talk about kidney donation on the radio! Charles was at work or he would have also added his unique and well-spoken voice to the discussion. I’ve been quoted on the radio before (even mocked by a local San Diego station) over kidney donation, but never had a 20 minute interview. The segment actually covered adoption, arthrogryposis and other topics too, some questions I was no where near prepared for. And besides a few things that I said and then immediately cringed over, I was happy to promote awareness of things I care deeply for!

So I want to thank the Jay Thomas show for having me on during Monday evening rush hour! It was fun.

Here’s the link: Radio Interview.

PS: When asked if I believed Russ*a should reopen it’s adoption program I would like to write out a better response. I’m much much better writing something out than speaking on the fly. So here’s my better answer:

“Do I believe that Russ*a’s little children, little humans, should be adopted into loving homes and out of the institutions? Yes, absolutely yes. Simply because they are entirely valuable and deserve love. The other question about if this should take place even though *some* Russ*an mothers drink during pregnancy and *some* children have FAS– still yes. I don’t believe any unprepared parent, like in the example, should have to deal with something they are not prepared for, but I also know adoptive parents who choose kids with FAS and who are overjoyed by them. (In fact I have permission to connect you with a parent who parents multiple children with FAS and would give you an idea if that is for you. She rocks this kind of parenting, by the way, and her kids are awesome sauce.)

For those adoptive parents ready and willing to step up, please open the gates. Please let adoption continue in this country. Because we will empty our pockets, crawl through barbed wire, trip over bodies lying around us and chew glass to get to our children. Let us have them.” 

There, I feel better. I believe I mentioned something about Putin with his shirt off instead of the above. Again, solidarity Ben!!!

 

Laura’s kidney (kidney saga continues!)

Monday, November 18th, 2013

(For a link to the story with text click here.)

I want to thank Ashlee DeMartino from 10News for airing the original story (seen here) about the cancelled surgery. James is a great advocate and because of his fight and the exposure from the news report a new surgery date was given that’s only two days from the original date instead of two or more months! This last week has been a roller coaster ride for the Rivera family. Thanks for all your prayers and support. My aunt, uncle and cousin fly in day after tomorrow! Exciting!

(The above video contains Roland being a cute little annoyance who wouldn’t let us do an interview. He was really cute. He talked the whole time I did. :))

There’s so much background to this that is incredible. One of my good friends, Meg (who is responsible for the veggie lasagna that kept my newly adopted and very stubborn son alive for the first month home), really cared about her coworker, James. In fact one day when she was over she pulled me aside to talk about him. She told me all about his family and his little girls and his circumstances. She encouraged me to find out my blood type and consider donating to him since she was one of the few who knew I was starting that process anyway. I contacted my kidney coordinator and, after talking to Janine I got James’ coordinator too, but long story short he didn’t fit in my chain unless we wanted to kick several people off the chain who had been waiting a long time. Plus our two hospitals weren’t really compatible, although Sharp was willing to try to work it out if there were no other options. (Sharp Memorial and the NKR pretty much would have done whatever I asked even if it was in no one’s best interests but mine. They take care of their donors.) Then Laura said she would see if she could help. (So in a way Laura gets credit for the six additional people in my chain who got their kidneys since James was now taken care of.) After the testing Laura found out that not only was she a match for the oh-so-hard-to-match James, but she was a VERY close match! The kind of match they usually only see with siblings! I texted Meg the good news about Laura and she was texting me back while in labor and I didn’t even know. Haha! Her son was born sometime soon after that! This is the most random amazing story. James’ and Laura’s surgeries are this Friday!

Kidney donation

Monday, October 28th, 2013

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As many of you know I donated my kidney to a stranger after  I told our local news 8 some time back that I would. And because Hubster had already donated his kidney to a stranger a year and a half ago I had already asked all my questions and seen with my own eyes the entire process. I consider my chain just a longer extension of his chain since I never would have even given a second thought to kidney donation if not for him exposing me to it and educating me on it. It took about seven or eight months of tests and meetings to be able to donate and have a chain set up. After realizing that my children didn’t need a kidney and odds were they never would, we decided that rather than saving a kidney they had less than a 1% chance of ever needing, we’d instead do something better for them: give them a world where people donate life to others. That (surprise to us) made us the first couple in history to do this.

(If you’re considering this at all please go here and click on “I don’t have a recipient.”)

I thought I’d write out my recovery experience for anyone thinking of doing this. As you all know I’m a total wuss and hate medical stuff. Also I’m not tough and during the very first blood draw to determine if I was eligible to donate I passed out. Yeah. Woo. So if you’re a wuss like me, fear not! It’s not that bad. Word to the wise: Lie DOWN when you get blood draws. TAKE your meds. DON’T eat like a pig. And DON’T watch Pete Holmes videos people post on Facebook right after surgery because your belly laughing has consequences! (Rob!) You’re welcome.

Timeline:

Monday – My surgery happened around 4:20pm. The last thing I remember before surgery was the anesthesiologist putting something in my IV and saying, “This will help you relax.” It did. I shut my eyes and relaxed, but a few minutes later I felt my stomach in knots. I thought it must just be stress or something, but I started to tell the nurse that I probably shouldn’t go into surgery right now because my stomach felt weird and achy. Well (haha) it turned out the surgery had already happened and that’s why I was sore. Yeah like four hours had passed. That was some good stuff in my IV.

Mr. Kidney was driven up to L.A. and sent on a red-eye flight to New York while I slept.

Tuesday – Mr. Kidney was successfully placed in his new home early the next morning. He started earning his keep right away by producing urine and adding an average of 15 years to the recipient’s life.

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Back here in San Diego I was doing pretty good. I was up and walking and on mooooooorphineeeeeeeeee. (It was for my shoulder, randomly. They gave me morphine and then asked if I still felt pain. I was like, “Pffff I don’t careeeeee! Weeeeeeeeeeeeeeee!!!”) We were told that the local media was going to come, but our coordinator cancelled it. I was just as happy to sleep. (PS: Mooooooooorphineeeeeeeeeeeeee! It was literally a good memory.) I also walked for like two hours straight that night because I could.

Wednesday – Check out day! Upon being woken up I was told I would be discharged soon and, by the way, two camera crews were here! And more were coming! The media thing was back on and, like, right now! And EVERY local station was coming! I jumped out of bed (like a granny) and washed my hair and put on real clothes. I was surprised how I could move around and was relatively fine after just having surgery. This was my first laparoscopic surgery and I recommend them over regular surgery. 45 minutes later a bunch of cameras and nicely-dressed people came into the room. We were all laughing and joking when someone said, “How does it feel to be the first couple to do this?” And I was all, “In San Diego?” And they were all, “No, seriously, the first ever!” (Which translated as “the first couple to donate through the NKR to strangers,” not, like, the first people to ever donate kidneys.) Charley and I high-fived. Then we talked about how everything we try to do is because God did it first: we love because he loved us, we give life because he gave us life, we adopt because we are adopted by him, etc. That’s paying it forward. We also talked about arthrogryposis (Hall’s contratures) and how we need funding and awareness. We talked about so many other things we’d rather be known for (seriously, our 15 minutes of fame came from lying on a table, woot), but we have since learned to stay on message: kidney donation = good. Sharp Memorial staff spoke about statistics, the odds someone in your family would need a kidney only you could provide (see my Q & A here) and I mentioned how easy this was. I do regret saying that surgery was so easy. (That was you on morphine, precious.) About an hour later I was home! That night my dad grilled up some ribs. I got a throne bed made out of pillows. My children were presented before me already washed and dressed and homework-ed. :) Life was good. I was queen.

Thursday – I got a phone call that all 7 kidneys in my chain had been successfully transplanted. That means all 14 surgeries had taken place since I kicked things off Monday night. Wow. And between Hubster and I, ten lives were saved and possibly one more kidney may come to San Diego on top of that as a bonus because we started a chain. It was an incredible feeling.

[My favorite article about our donation chain comes from the LeTourneau blog because it gives the numbers for the US. 96,645 people waited last year for a kidney. Only 16,812 got one, and of those people only a third got one from a live donor which lasts much longer (adding priceless years to their life) and takes better (rate of successful graft skyrockets). Of the enormous need, only 165 donors gave to strangers. 4,903 people died waiting.]

{As those of you who knew my mom and how her life was abruptly ended at 39 years old, I can’t tell you how priceless, utterly utterly priceless, 15 more years with her would have been. Live donors add more years to a recipient’s life than deceased ones. That’s why we’re doing this now as opposed to just offering our bodies upon death.}

I was only out of the hospital one day and already I was taking longer and longer walks. Rolly would grab my finger with his little fist, say, “mon!” (come on!) and walk me like a pet. It was cute. And I was also able to get out of bed and put my socks on by myself. I wanted a trophy that said “sock master.”

That night we went out to a family dinner with my cousin Laura (who is donating her kidney next month), James (the guy getting her kidney) and James’ entire family (who made the dinner). We got invited because I was the one who shared James’ need for a kidney on Facebook and that was the magical “share” that Laura pounced on. Yes I get credit for just sharing on Facebook. (It’s amazing what a share on Facebook can do!) We had excellent food and company, although I felt all the bumps in the road on the drive over. It was trippy that I’d just had surgery a few days before. My husband wanted so bad to just help me into my chair or something but I was all “I got this” and stuff. I also ate a ton.

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Friday – We found out our local story went national. We were floored. And friends kept finding us all over the Internet and on their local news stations.

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That morning I gave a phone interview to Yahoo! Shine and then the Huffington Post picked it up. We were living in full-on bizarro world. Advocates for kidney donation were eager to get as much exposure as possible. (The producer of the Queen Latifah show called my cell… twice. I was totally fan-girling.) Then we got a call from Fox and Friends who asked if we could come on the show THE NEXT MORNING. At first I said no since I’d never seen the show (we don’t have television at home) and we only knew it was connected to Fox News in some way. But after talking about it we realized it was the kind of exposure we would want for kidney donation, gosh especially if we were on the waiting end for one. Plus it was the first national news to take us live instead of just replay a local news’ edit of the interview from Wednesday. And I’m glad we did.

Saturday  – I took off this weird patch behind my ear in the shower that morning. It was a nausea patch. It was an hour later that I realized why the patch was important. Oh dear Lord why did I take off the patch? Why?! I’m very prone to motion sickness. (Did I mention I pass out when I give blood?) I seriously have the weakest constitution for a healthy person. My digestive system was also not quite awake since surgery. I don’t eat much meat regularly, but I had had FOUR meat dinners in the last four days. I’m a genius. The studio had sent a car which showed up at 5:20am. And the trip downtown only took 15 minutes, but it was enough. I was car sick. Then the live interview started. Click here to see it. I remember feeling fine during it, like on a natural high from being terrified of millions of eyes on me, and then it ended with the disembodied voice of Anna Kooiman saying goodbye and then I was off to bed to let the nausea run it’s course. It was also at this point I decided that I was done with my prescription meds since I wasn’t in pain, it was just the nausea bothering me.

And I kept getting teased about glow sticks… oh wait let me back up. So a bit before my surgery my brother-in-law had his own surgery to remove his gallbladder. We had teased him about how he possibility could have gotten so sick that he needed surgery and determined it was from chugging glow sticks. (A natural conclusion.) I even drew hilarious (because I’m hilarious, obviously) cartoons depicting his situation.

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Yeah so during the next several days of my off-again-on-again nausea the joke was that I had also been chugging the glow sticks. I deserved it.

This whole recovery I have not really felt a lot of pain where the surgery actually took place, in my gut. My biggest pain for the first few days was in my shoulders, particularly my left shoulder. I guess they fill up your tummy with gas so they can see around in there and sometimes the gas can settle in your shoulders. But in rare cases like mine it’s like a stabbing pain if you move just right. No body told me my shoulder would hurt like this! And by “no body” I mean a nurse, the coordinator and my doctor… twice, they all told me it was a possibility. The whole Sharp Memorial Hospital team educates you about everything, even stuff you don’t want to know. So… what was I saying? Oh yeah, NO BODY told me this would happen. ;) Okay maybe I just didn’t listen. My two lovely morphine requests in the hospital were for my shoulder and only for my shoulder until the gas settled in a couple days. So once the shoulder felt better I was like, “Won’t be needing these anymore! I am so smart!” And out went the pain meds. I don’t know what I was trying to prove. It didn’t feel good for like three days because of that little stunt.

But a few days later (one whole week after surgery) I was feeling pretty darn good. I would occasionally feel nauseated by overeating, which I did a lot of. I really did nothing but eat. Why did I overeat so much? It was always comforting and then I’d regret it. But even so I lost five pounds. ;) Surgery winning!

There was one day, randomly, in my second week of recovery, where my left side started to ache slightly where Mr. Kidney had been. It was this very slight, hallow ache. I think because I wasn’t feeling the nausea and I wasn’t feeling pain, all that was left to dwell on was this little constant empty ache. And then that ache started coming with this psychological feeling of loss. Not that I wanted my kidney back or even regretted the surgery, but I just felt emotional for that day and rubbed my side a lot. Once the ache went away I was over it.

Now it’s been exactly two weeks since surgery. My new abilities include being able to sneeze without my tummy going numb from the jostle, eating whatever I want without nausea and pretty much going back to normal life in every way. (Yay driving again! Yay making out with Hubster!) The only thing they don’t want me to do is weight (read: kid) lift for another two weeks. Even though I picked up my son during that appointment making the doctor say, “I’m going to pretend I didn’t see that.” Then I asked if I shouldn’t change any diapers for the next six months, just to be on the safe side. Dr. V said, and I quote, “Oh no diapers for two years, minimum.” Haha!

So two weeks out I’m feeling great. I’m back to my old self, but very tired. My energy has been zapped and I’m out of shape though. Not that I really worked out before, but lying in bed so much has made me flabby and weak. I went out tonight for a few hours with friends and when I got back I slept for a long time. I’m the queen of naps. And playing with my kids wears me out a ton. Thankfully, the grandparents have taken care of them for the first two weeks and now Uncle Bolt is helping my husband take care of them for the next several days. I have done some parenting, but mostly they’ve been fed, bathed and sent to school without my help. It’s been lovely. I already miss grandparents and want them to move back.

<Update> Since I forgot to post this I’ll add a bit more. It’s now been three weeks exactly since my surgery. Here’s what my surgery scars look like. (I’m sucking in so hard for this picture.)

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It’s easy to see since I’m so white. There are two dots on my left side and one in my belly button. (The red dot above my belly button is a mole.) My hubby had the same thing, only his belly button incision was more noticeable because they pulled his kidney out through there. (Yes, kidneys are that small and only weigh a few ounces.) For me, they put the camera or something in my belly button and pulled the kidney out of my C-Section scar. Based on Hubster’s rate of healing I expect the redness to fade and the marks to be mostly gone not to long from now.  His belly button went back to normal too.

Last Saturday our story went International and we were welcomed to a live interview with Weekend Sunrise, a morning show in Australia. To see the interview go here. I had a slight cold but you can’t tell. I mostly never know what to do with my face, and Charley has to remember not to be a robot so we have the TV nicknames of Twitchy and Zombie, which I feel is perfectly on display in the screen grab below. ;)

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Ha!

Australia doesn’t have donor chains, but they do have one-to-one donation and also donor swaps which involve, if I remember correctly, two donors and two recipients. They also have around the same percentage of donors  per year that we do. So the same awareness we need here they need there, but in both our countries the numbers are on the rise! Hubby was even able to explain how a donor chain worked so maybe they’ll adopt that practice! Who knows. It’s exciting though!

So now life is back to normal and we’re all just counting down the days to when my cousin Laura flies in from Tennessee with my Aunt Linda and Uncle Bud so she can donate her kidney too! Exciting!

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Again if you are interested in getting more information about this process go here and click on “I don’t have a recipient.” You are under no obligation, but you can get your questions answered and get lots of info. It goes without saying that there’s a major need and if you think you can fill it that would be wonderful.

 

AMC Mini Meet Up and Day Before Surgery

Sunday, October 6th, 2013

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Face painting by Madison

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Laelia, Roland and their friends

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AMC only picture

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Barbara

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Big accessible playground and Rolly just wants the toy cars

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Willow was yelling at him, it was adorable

Well I thought I had a bunch more pictures, but I don’t. Anyone with pictures send them my way and I’ll probably get them next week! We had a lot of fun and the kids really enjoy seeing other people like them. They do not, however, enjoy the five hours in the car. Laelia was good, Roland was a crazy screaming monkey pants. He especially hated when I sang along with the radio. :) I told him I feed on his displeasure. Yummy yum yum yummy yum.

Roland for the first solid 30 minutes in the car: “Mama doing? Doing Mama? Mama? Mama doing? Doing? Doing?”

Roland after 30 minutes in a car: “No Mama! Noooooo! Noooooooo! No Mama! NO!”

Me: “What do you want Roland?”

Roland: “Out.”

When we had the ocean in view I said to my husband, “The ocean, she calls to me.”
He replied: “If the ocean is saying, ‘Mama doing? Mama doing?’ I’m hearing it too, and I don’t think that’s the ocean.”

Oh and another funny story. While we were out I asked my dad to plant this one tree out of the ten trees in the front. There was this pipe in the way so I hadn’t gotten around to breaking up the pipe. It was old, was only six inches under the soil so it wasn’t important. And it already had holes in it so it hadn’t obviously been used for a while. Well guess what. Yep, he broke right through that pipe. (Yay!) Which had cables in it. (Uh oh.) Which took out all the cable and Internet access for us and our neighbors. (Boo.) A guy from Time Warner came out (today, Sunday, a few hours after the incident) to figure out what the heck happened. Dad handed him the pipe and asked, “This one yours?” Yep. So they dug up the pipe and put a temp fix on it.

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So my tree still isn’t planted and they may have to rip through the rest of my trees to bury the cables deeper. Ugh. We saved up forever to buy these darn trees and it took tons of work to level that area with a shovel and plant them. They are the only plants I haven’t killed too. It makes me want to cry. Save the trees! No Internet for anyone! :)

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Oh and we have great news! Yesterday Grandpa installed a new toilet that is several inches lower than a normal toilet and a bidet for it too! Now Laelia can get on the toilet ALL BY HERSELF!!! For the first time in her life. And that bidet makes her laugh hysterically every time. :)

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The blue and pink thing is six phone books duct taped together. The adaptive PE teacher made that for her. She can get on the toilet herself only when using that to step up.

Seriously she learned this trick two days before I have a surgery where I won’t be able to lift her onto the potty for weeks. Her timing is not my timing, but I’m so thankful she did it. And this will really help me care for her after I recover a bit.

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And Grandpa is also building a ramp to get to the garage. It will get done after I go to the hospital so my only picture is of boards lying around. This is the last space in our home that’s not accessible. I don’t know what the kids would do in the garage, but now they’ll be able to get to it. Maybe I’ll make them sweep it. :)

Well I just drank an entire bottle of laxative. So I need to… um… go… now.

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Surgery tomorrow!

I’m ready!

Perfect bodies in Heaven

Monday, September 16th, 2013

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Beautiful, but the wrong kind of hope.

A nice family of four came to my door the other day. They were dressed too nicely for the San Diego weather and had big smiles plastered across their faces. I could see all their teeth. They introduced themselves, the faith they represented, and then got down to business. After some prompting by the mom the young boy handed me a booklet. “Here’s some information about Heaven,” he said. Inside was an illustrated picture of a man and a woman in flowing white robes. “This is what we will be like in Heaven,” his mom told me, “perfect, with no disease or disability or flaws.”

Sure, great. But then I found myself shooing them away quickly. Because my daughter had come up behind me, shyly peeking around my leg. And their looks and words held so much pity that I was afraid she would see them. Hear them. Think it had anything to do with her.

When it had everything to do with them.

Because there’s nothing sad about my daughter. And everything wrong with the way they viewed her.

Once inside the house, with the door thankfully closed, I stared at the drawing in the booklet of the two ambassadors of heavenly perfection–Caucasian, light-skinned, small noses, blonde–swimming above the skyline in flowing robes. I assume the author of this booklet got his or her idea of “perfection” by studying the bathroom mirror. But that was not the only thing that bothered me. Consider the image of these two Heaven-dwellers. They were both in human bodies that had obvious limitations as evidenced by the length of their limbs, the visible small bulges of muscles, the range of motion of their joints, etc. In other words, these two representations of perfection were not taller than a basketball player, stronger than a wrestler, or as limber as a gymnast. They had obvious limitations. They were Hollywood-ready but they were also, to make a point, disabled.

Disabled:  1. (of a person) having a physical or mental condition that limits movements, senses, or activities.

I think it’s important to realize how disabled we all are. We all have limitations. This booklet could just as easily have shown my two beautiful children—contractured limbs, missing muscles—in all their glory, flying through the clouds. It would be an improvement over what they had in the booklet and just as accurate.

So what is our baseline of heavenly perfection then if it’s not our own bodies made more attractive? This is a question I imagine this family struggling with. Because maybe they just don’t know that these fleshy bags we carry over our precious souls are not the end-all of life and perfection. Maybe they don’t know that any deviation from a majority body type or shape or color is not evidence of the Fall. No. We’re ALL evidence of the Fall! We’re not perfect! I, for one, can’t whistle or ride a skateboard. And you better believe that kid me would have had a booklet of robed skateboarding whistlers had I been in a family who went door to door! My version of glorified.

We have this human response to difference. When our children are born different we grieve, then we accept them, and sometimes we repeat that cycle perpetually. My feelings are, my grief is, normal. Natural. At times even healthy. But it’s not truth. You follow me? Human beings are beautiful. They are unique. They are priceless. And they are different from each other and there is nothing inherently sad or bad or grief-worthy about that. God takes pride in his work because he damn well knows he’s good at making people. “You formed me in my mother’s womb,” writes the psalmist, “I praise you for I am wonderfully made!” And when those with disabilities are pointed out God responds with ownership, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the LORD?” (Exodus 4:11)

The Hebrew word bara is used when humankind is made and it implies a special creation of God, outside of using materials already there. In other words he didn’t just use the forces of physics he had already set up in Genesis 1:1 to let humans just slide onto the scene, no, he intervenes and breaths life and gets his hands into the work. Much of the world he set into motion, but for us (for us!) he takes his image, which is not a physical thing, and molds us into it. He spun out a physical being from his own character and emotions and energy and then personally knits together each of that first being’s children inside their mothers. If the Bible is to be believed.

People are gifts, priceless and precious gifts—not something we can bottle into cookie-cutter images on religious booklets! Oh we are so much more! And if this family had recognized that, realized the importance of each of us, they would have gasped at the beauty that is my daughter, suddenly on the scene in all her wonder, and cried and clapped at the workmanship evident in her. On. Their. Knees.

And I’m telling you, our glorified heavenly bodies will look more like our souls and less like our skins. Mark my words. My children do not wait to be like the rest of us; we all wait together to be something new, something indescribably better.

Happy Gotcha Day!

Thursday, August 15th, 2013

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We take “Gotcha” day literally around here. Good catch, Laelia!

My baby boy’s Gotcha Day is TODAY! Happy one year home little Amerikrainian!

Last year on this day (August 15th) Roland left the orphanage and was promised that he would never EVER go back there. Welcome to family; family is permanent.

“Are you sure you want him? Would you rather have a ‘healthy’ child?”

Our son (the diamond in the rough, a pearl of great price, the treasure in the field) is forever wanted! Desperately wanted. Incredibly loved!

What they couldn’t see, we saw so clearly.

So did all of you.

“Didn’t you pick him up two days ago?” a nanny asked on this day last year. No, we hadn’t. Was he just a number? Another mouth to feed? He’s so much more than that.

I carried him out the formidable green gates, down the stairs with no handicap access, across the streets with no crosswalks and into the car with no car seat.

He literally left without a thing to his name. Well he would have. They striped him of clothing, and then when they realized we had left his extra clothes at our apartment in Kiev, an hour away, they suggested we leave him in the orphanage another day. (Um, no.) Finally they allowed us to take home different clothes (comically too big, mismatched and pink-laced) only because I asked really really nicely. Aaaaaaaaaaaaaaand it also may have had something to do with the fact I had just gifted them 100% of the money the Ukrainian government had in a savings account to feed Roland that would have gone to me. My back. Your back. Scratchy scratchy.

He had no toys.

He had no ability to chew the first foods we gave him. And he choked on his first snack. (Great job, mom!)

He was so scared during our walk around busy Kiev (on our aimless hunt for diapers) that he started shaking and then threw up down the front of my shirt. Cars and buildings and people and noise… this was all completely foreign to him.

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With no language and no way to get away he braved the terrifying umbrella creature over his head. What torturous moments in the rain.

And, even though I imagined this magical instant bond, he was also wary of this strange woman he was strapped to.

But then that woman put him in a bathtub.

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Or glorious day! He LOVED his first ever real bath! So much!

He discovered the microwave that was kept near the floor because “Let’s put microwaves on the floor!” said the dumbest apartment designer ever.

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And the best toy in the world was the door in the apartment between the bathroom and kitchen that he loved to close, then wait excitedly for it to open again, then close it again.

He didn’t make great eye contact.

He didn’t know how to hug or rest against me or cuddle.

But he was willing to learn. Slowly. Cautiously.

He fell asleep for the first time in his life that night with a Mommy right next to him, hand on his tummy–no bars, no distance.

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With those little stiff arms that would NOT bend.

Several days later Roland would get his passport and fly home.

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…and scream most of the 26+ hours of travel. And throw up on the plane. And hate us for doing that to him for a while. :)

Then he was home. And he was ours. And it was so surreal. That first night home I fed him a bottle of donated breast milk and rocked him gently. It would be three long, hard days of detoxing whatever drug was in his system before I got a moment like that again. Well worth the wait.

He is not the same boy I took out of the orphanage that day. He’s a maniac! Haha!

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(Click to enlarge.)

Happy one year home little man!

Roland

We love you.

To celebrate Gotcha Day he got chocolate! (Haha, not as great as it sounds thanks to his new metabolic issue.)

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We made sugar-free chocolate cake and sugar-free chocolate cookies to celebrate since Rolly now has sugar limitations.

Cookies: 3 mashed bananas

1/4 cup of unsweetened apple sauce

2 cups oats

1/4 cup of unsweetened almond milk

1 tsp vanilla

1 tsp cinnamon

1/4 cup of sugar-free cocoa powder

350 degrees for 20 minutes

Cakes: 1/2 cup ground walnuts (or crushed)

1/2 cup carob or cocoa powder (sugar-free)

1 tablespoon apple cider vinegar

4 egg whites

2 tsp vanilla

1 teaspoon cinnamon

350 degrees for 20 minutes

(The cakes tasted like sawdust so I suggest adding some almond milk or unsweetened apple sauce.)

Change

Thursday, July 11th, 2013

If you have read the post below you know we are trying to make the term “Hall’s contractures” refer to arthrogryposis multiplex congenita.

“Hi, my kids have arthrogryposis multiplex congenita… you know, Hall’s contractures! Google it!”

And it’s so much easier to Google than “AMC” which gives you movie theatres, or arthro…gry…posopsos… that word.

(Actually now if you Google “Hall’s contractures” the first few links teach you all about my kids’ condition! Awesome!)

I don’t want to lose our arthrogryposis identity or change the name of our wonderful Arthrogryposis Multiplex Congenita Support Incorporated group that I adore. We’re NOT swapping out one name for the other. What we’re doing is adding a colloquial term for a long medical diagnosis. (You know, how we call solanum tuberosum… a potato.)

We’ve started a petition on Change.org to do just that! We’re asking that American Medical Association, World Health Organization, Shriners Hospitals for Children, Children’s Hospitals and all major hospitals consider adding “Hall’s contractures” to the literature they distribute in print or on the web on arthrogryposis multiplex congenita. (For example: “Hall’s contractures or arthrogryposis multiplex congenita refers to a condition of the joints…” OR “Arthrogryposis, also known as Hall’s contractures, is cool beans…”)

Hall’s contractures has already been added to the arthrogryposis wikipedia page.

That’s it!

Please go here to sign your name to our petition and read more about the cause.  Pretty please do this for me. Please share this petition far and wide to anyone and everyone you know affected by AMC or NOT affected at all!

It may seem like such a weird or small thing to do, but you’d be amazed how much recognizing, pronouncing and remembering a diagnosis can make us feel less alone in the world and less strange. Sorry but arthrogryposis sounds like the plague and “Hall’s contractures” sounds like a simple physical condition. Plus both my kids had the straight arms (extension contractures) and referring to it as arthrogryposis (which literally means crooked) was so confusing and misleading. Calling it Hall’s contractures makes more sense! And I’m hoping this can get us more awareness and possible future funding for research!

Last year when we were on the news, the reporter mispronounced arthrogryposis. I have dear friends and family members who cannot pronounce it either. They love my kids, but they don’t know what they have. When fundraising for our adoption we had people say, “Can I just say you’re adopting a guy with a big long disability?” Why in the world would any celebrities or organizations want to fund research for us?! They can’t say the word!

Hall’s contractures. Sign the petition. Even if you think it’s dumb or won’t do any good. I’ll take the blame if this fails. Let’s just try something. Please.